Prevention: Avoiding Disability

THE OPEN MIND

Host: Richard D. Heffner
Guest: Sir John Wilson
Title: “Prevention: Avoiding Disability”
VTR: 5/23/87

Heffner: I’m Richard Heffner, your host on THE OPEN MIND. You know there are on planet Earth, nearly half a billion disabled persons. A heartrending statistic. What’s worse is that so many of these persons need not have become disabled. Their disabilities, our disabilities are so largely preventable, whether they stem from disease of accidents. What’s good, of course, is that IMPACT, a UN affiliated, not-governmental international initiative against avoidable disability is now in being. Key to it, that extraordinarily insightful, though sightless Briton, Sir John Wilson, today’s guest on THE OPEN MIND. A visionary in every sense, Sir John was the principle speaker at the prestigious Albert Lasker Medical Research Awards luncheon in 1986 where I first heard and was literally mesmerized by his brilliance, his humanity, his profound wisdom and practicality. As Arthur Sackler’s (?) Medical Tribune later commented on the Lasker Award speaker, “Sir John brings to naught the scriptural injunction, Matthew 15:14, ‘If the blind lead the blind, both shall fall into the ditch’”. Indeed this amazing human being rises to grace, raises us, too, gives us hope as he documents the human imperative that we, all of us, work so much harder and so much more wisely to prevent the disabilities of all kinds that so needlessly plague mankind. In part it has been through the international IMPACT organization that Sir John has worked his miracles. Now there is a private, non-governmental, American IMPACT Foundation in Washington, DC, organized to take action against avoidable disability here at home and to add America’s resources to the global movement. It is not after all, God’s will that so many are disabled. Frequently, it is our own carelessness, sometimes the fact that we care less than our humanity dictates. So that today I want to begin THE OPEN MIND by asking Sir John about the degree to which, as he noted not so long ago, the world is suffering from compassion fatigue.

Sir John: Well, Mr. Heffner, I think it’s a very fair question. After Band-aid and Sports-aid and the television documentaries about famine and pestilence and plague, it would be surprising if we weren’t suffering from compassion fatigue, because there is so much to do. But I really believe it is not happening. The charities which are concerned with famine are, in fact, doing as well this year as they were last year and I think it’s a great tribute to the expanding compassion of people, particularly in the developed countries, that this is happening. I mean I’m beginning to wonder whether this isn’t becoming part of a new epoch, if you like. Just as in science when our sight becomes too dull, we invent telescopes that will peer into the galaxies and microscopes that will look into the structure of an atom. And when our brains become too dull and too slow, we invent computers. So maybe when our world vision becomes too narrow, we begin to develop a new compassion, a feeling of oneness over this planet of ours, with all its problems. Of course, television, your medium has done more there than anybody…anything else…

Heffner: By bringing to us the image of the suffering?

Sir John: Yes, and identifying with it. I mean it’s not easy to identify with the plight of an Indian villager or an Arab refugee, just through reading about it or thinking about it. But when you put the thing on the screen just as I’ve seen so often in refugee camps and that sort of thing…I do try, I do try to talk about it and paint pictures, verbally. But it’s not as good as you or what you do. You can bring the thing right into the…the experience right into the drawing room.

Heffner: But, Sir John, if you are correct that there may be a resurgence of compassion, perhaps a new kind of compassion today…How do we explain in terms of self-interest what has been, up to this point, the comparative failure on our part to be sufficiently aware of the need for prevention, for preventative measures? Just in terms of self-interest.

Sir John: Don’t you think it is always a fact that prevention is pretty well the last thing you think about? Take motor accidents in this country. Fifty-two billion dollars a year are spent on repairing people after they’ve crashed in motor cars. And yet, in terms of self-interest you’d think that would be an unanswerable case. It’s even worst in some areas. The accident rate amongst motor cars in India is unbelievable and in Brazil. But still the emphasis is not on prevention. And I would have thought that…it’s just now beginning to happen…I would like to see the time when we don’t just have Ministries of Health, we have Ministries of Health and Prevention.

Heffner: Is that what you’re aiming for with IMPACT internationally and here in the United States?

Sir John: Don’t know about the United States, but certainly internationally. We’re trying to develop national programs for the prevention of disability. You see, the numbers that you said at the outset are phenomenal…and increasing. Not only could there well be five hundred million disabled people in the world today, but those numbers are going to double, unless we do something serious about it. And whereas one immediately assumes that disability is in the developing countries, that’s where the biggest numbers are. But the biggest prevalence of disability is here in North America amongst the over sixty-five age group. Two-thirds of all the disability in North America is over sixty-five years of age. And that particular age group is going to double over the next forty years, according to the people who work these things out. Now this is something which I think makes this attack…when we started the thing, we were not thinking in terms of America and Europe. We were thinking in terms of developing countries. We now believe that that focus was wrong. There’s a tremendous amount to do here. And of course, the technology which has developed here will spill over into the rest of the world. But when you talk the age thing, let me just give you one example. In this country, one person in five hundred is blind in the general population. Over age sixty-five, it is one person in fifty, just about equal to the blindness rate of Bangladesh. Over age eighty, it is one person in sixteen, just about equal to the blindness rate in the worst river blindness area of West Africa.

Heffner: How do you account for that? Carelessness or that we care less?

Sir John: This is happening because the disabilities which cluster around age are…have so far been thought of as inevitable. Now the message we want to get across, and it’s not only our message, it’s the message of people like your National Institute of Health, is that death is inevitable, at some stage. We can make much more, long life, but death is inevitable. But what is not inevitable are the disabilities of age…shouldn’t be there until the very last segment of life. And the fascinating thing is that with recent research which has been done over here…and it’s of international interest. For those people who do not have disabilities, in the later part of their years, the retention of memory, the retention of physical fitness is surprisingly better than had been previously believed. Now I think that this age-linked disability is just as important to do something about as the population linked disability which is increasing, though, rapidly throughout the world.

Heffner: and yet what you say now comes as such a surprise to me. I’m shocked at the thought, as you expressed it, delighted by it, that there is no need to think in terms of disability. The natural course of events that one’s body and one’s mind, that they disintegrate in time. Obviously you feel, death, yes, but not disability.

Sir John: You see the question we always asked is why are, shall we say, twenty percent of the people over sixty…why do they have disabilities? Why don’t we instead ask, why do eighty percent of the people not have disabilities? Why are there people who go on with extraordinary capacity into their nineties and even later? And some of the greatest writers and philosophers and musicians have done their best work in their latter years.

Heffner: But now, now wait a minute…I don’t want to misunderstand you. You’re not suggesting that the vast majority of human beings go vigorously into those very, very late years, are you?

Sir John: They don’t at the moment, but the research which is now being done on aging in this country does show that there is…that as age increases, longevity increases, so it is possible to postpone the disabilities of age until the very last segment of life. Now if that can be done, then it gives you a completely new pattern, a new term of the human predicament. Now if that is true there, think of it in the developing countries where we haven’t yet hit the population imperative. At the moment, you see, in this country, we are reaching the point when the population curve which started by being a triangle, at the beginning of the century, will be a quadrilateral at the end of the century. Now that is not happening yet in the developing countries. But it will, and when it does, then added to the disabilities of age, will be the disabilities of the tropics, the disabilities of deprivation and there you will have a tremendous problem.

Heffner: You talk about the disabilities of deprivation. If I understand correctly, there are disabilities of deprivation in this country to a fare-thee-well.

Sir John: There are, indeed. I mean it’s an extraordinary fact that amongst the Amerindian population in New Mexico, where I was quite recently, the prevalence of deafness amongst those people is roughly equal to Thailand and Burma. Amongst the Black communities in the District of Columbia, the prevalence of blindness is three times the national average.

Heffner: Now how do you explain that?

Sir John: I don’t know. That’s one of the things you want to find out. And one of them… we’ve been discussing the possibility of having a national seminar to look into just that. And it doesn’t have to be a sort of confrontational thing. What we want to know is really why it’s happening. Are there physical reasons? Are there social reasons? Are there economic reasons? There is obviously a link between deprivation and disability. But we need to know a lot more about it.

Heffner: Sir John, there are so many people though, and a number of them have sat at this table, who have spoken about limited national resources and that the great problem is how do we assign our national resources? This age of Methuselah that you refer to, can it be achieved within the context of what we have available to us? Does it mean, as people have said at this table, that we are now paying much, much more attention to the elderly rather than to the young and that it is our children, indeed in the country, who are being deprived?

Sir John: I can understand that. I mean, is an aging population a sign of decline or of advance? The philosophers will argue about that. There’s no doubt at all, it is a political fact, longevity is increasing and will increase over the next twenty years in this country. My belief is that it is equally possible and without any great change in resource allocation to make that old age something which is tolerable. If you don’t do it, then I think it’s a race between the science which expands quality of life and the science which expands the period of life. And I think those two have got to come together, as in so many directions, I think science has got to begin to have a social content and to look at this thing. Now you were talking about resources. Let’s look at It on the world scale. Last year in India we restored sight to just over a million blind people. The average cost was from eight dollars to twenty dollars. Now the same thing could be done for some twenty million deaf people whose deafness results from a fairly simple middle ear impairment and a rupture of the ear drum. We believe that the greatest cause of orthopedic handicap in the developing countries is a lower limb impairment resulting from polio. Now you see these people crawling about in the slums of Africa and Asia. The muscle operation which could enable them to walk straight, together with a caliper and gadgetry of that kind, probably would cost about fifteen dollars. We’re not talking about vast sums. We’re talking about a better delivery system of a very simple technology.

Heffner: But, Sir John, I must question you about this. If you’re talking about eight dollars and thirty dollars and ten dollars for the operations, the cost of human repair, are you saying the same thing is true in this country?

Sir John: Oh, no, nothing like it. I mean you couldn’t do a cataract operation for eight dollars or twenty dollars or probably not two hundred dollars. The cost is much higher here. I’m talking about the global picture.

Heffner: But then you see I have to come back to this matter of resource allocation and whether the enthusiasm and the optimism you express are realistic in terms of the way we do allocate our resources, what we pay ourselves.

Sir John: You know, I believe that if you worked out the figures, you would see that the cost…it would be true that the cost of subsidizing age, the cost of subsidizing disability in age is probably far greater than the cost of preventing disability in age. Now these figures have not been worked out, they should be worked out and I will suggest at the World Bank that we should really look at this thing in terms of the most realistic and economic possibilities. It is not just a political decision, it’s also an economic one. And I quite agree with you that if it is going to involve resources that are going to cripple the services given to children then I wouldn’t be in favor of it. But I don’t think it is that. I think that one of the purposes of this American IMPACT Foundation and it could be of international value, is to really establish just what is practical in a country like this, a country of great affluence, but with areas of deprivation in the middle of it.

Heffner: Of course, what you say is so terribly, terribly important. That we are costing ourselves untold sums of money, probably greater sums than would be required to provide that ounce of prevention, which has to cost much less than a pound of cure.

Sir John: Now what does it cost, for example, for one of the people I was mentioning, one of the Black communities in the District of Columbia, he’ll probably be on some sort of assistance. And what does it cost for him to go on being blind when a cataract operation, which even if it costs a thousand dollars or something, it would presumably be an economic advantage. I don’t know. These figures have got to be worked out. It’s a new thing, it’s a new thought. We haven’t done this. We’ve done it…oddly enough we know more about disability in India and Peru and Africa than we do about disability in the United Kingdom and the United States. And this is what we’ve got to get on to.

Heffner: It’s so interesting that you say that. And of course, I go back to where I first met you in November 1986 at the Lasker Awards luncheon. And I was so impressed. You began, you said, “I have come with very real affection to love this dynamic, innovative brilliantly successful, self-absorbed, ‘have a nice day’, consumer democracy of yours”. And you go on, however, to say, “In a questioning, querulous world with what is so rare, so exciting and so admirable is the optimism of your scientific community, the conviction that the movement of history is still forward and that there is no intellectual barrier that may not be penetrated by the spirit of inquiry. Even more than your power or your money, it is this confidence which justifies your leadership of the science of the modern world”. High words of praise. Is there some downside to that?

Sir John: There’s always a downside, isn’t there, to science. And it is a scientific optimism which I value and admire so much in this country. We’re all familiar with the downside of this thing. The scenario that we’re going to blow ourselves to extinction, that there will be population glut and all the rest of it. But just assume for a moment that that scenario isn’t right. The other day I read something, coming up in the airplane, it said, “Our young men are indolent and insolent. Our young women are indecorous and indecent and we’re on the edge of perdition”. That was written by Peter the Hermit, eight centuries ago. And these hoary old hermits have been saying the same ever since. Now I think we’ve got to venture upon a little optimism. Particularly because if we do avoid that scenario and surely the lesson of history is that thought there may be dreadful disasters at the individual or even the institutional level, the world does go on. And I think we’ve reached a point at which we do need to look at the alternative scenario. And that scenario could be something miraculous.

Heffner: The miracle being?

Sir John: The miracle being, just look at the possibilities. I mean the things that are happening in science here. The molecular biologists who are examining the exquisite interaction of the human immune system and developing vaccines against diseases which have been the scourge of children from the beginning of time. The neurologists who are looking at the factors which cause or inhibit growth, with the prospect of nerve regeneration, something which would change the whole pattern of public health. I think we are at the point at which the terms of the human predicament are on the point of being changed. And if that happens, then the next thirty, forty, fifty years could be a period of immense change. I could be one in which the human species, in a sense would move to a new dimension. Now I honestly think that’s true and what I would like to see is our celebrating that. Just as a Jewish family in it bar mitzvah celebrates its racial origin, can’t we, just once in a while, celebrate in our great places of reverence and worship, can’t we…can’t we celebrate this advance of this stupid creature, mankind, to something which has the vision of nobility about?

Heffner: Sir John, how do we factor in the phenomenon of AIDS? Factor into this, this vision that you have.

Sir John: I know. I know this is the joker in the pack. And it’s bound to be. But surely this is not undone…I mean we’ve had these things before. My belief, and I’m convinced about this, is that we will discover a remedy, we’ll discover a vaccine. The problem then will be how to deliver it. The problem of all medicine is not how to make it, but how to deliver it.

Heffner: Then you feel that that is, in terms of dealing with AIDS, going to be the stumbling block. You feel, I gather you feel that within five years we’ll have the vaccine.

Sir John: Yes, we will, I think. But then…we invented printing a thousand years ago and still half the world’s illiterate. What we’ve got to do is have a delivery system which is capable of matching the revolution in the biotechnology.

Heffner: You don’t think…well, of course you’d think we shall do that. But what would be the difficulties in as frightening a situation as the AIDS situation?

Sir John: I know. It has all sorts of awful implications. It has implications for the whole expanded program of immunization. You see, with every breath you take, somewhere in the world a child dies or is disabled by a disease against which he could have been vaccinated at a cost of about three dollars.

Heffner: Now. You’re talking about this…

Sir John: I’m talking about now, now. That’s happening now.

Heffner: That’s an incredible statistic.

Sir John: Put it another way. It’s as though every day thirty jumbo jets full of children crashed. Or seven million in a year, a major war, casualties of a major war. Now that is happening now. The problem there is not the problem that we haven’t got the vaccine. The problem is that we haven’t got the delivery system. Now one of the purposed of our IMPACT program is to try and help develop that system. We are now dealing with some eight hundred and fifty thousand children being vaccinated in Greater Bombay. At the moment we’re trying to deal with seventy thousand people who could have sight, movement or hearing restored in that city at a cost which shouldn’t, on average, exceed twenty dollars. Now, it’s an impoverished country. It’s even worse in some countries. We have to find the answer to that, create a delivery system which is credible and which we can link the extraordinary advances of modern science to something which makes that science deliverable. And what I dislike about it at the moment is very often and I think that you’ll probably agree with this, is that xenophobia of science. The idea that somehow or other science is national. I mean science is not national. We stand on the shoulders of giants. And that’s why we can see a little further in this generation than we could in the previous one.

Heffner: Do you think that that has been a stumbling block in modern times? Nationalization of…

Sir John: I’m sure it’s a stumbling block now. I think that, particularly the…if I may call it xenophobia, the wrong word for it in this country, but the United Nations…Now the United Nations is a delivery system of superb competence. Now, of course, there may be all sorts of things wrong with it, and working inside it, you can see this. But it is the only system we’ve got. It’s a method of…as this world of ours fumbles forward, to some sort of solidarity, that is a mechanism which you would go through. And yet there is, not only in this country, but in my own, this feeling that in some way or other, it is a menace to the national prestige. Now if only we can get those two together, that is part of the delivery mechanism I’m thinking about. But it’s got to be, it’s got to be not just an anxiety about compassion fatigue, but a different feeling of solidarity.

Heffner: If that is the case, if that’s a stumbling block and you identify that quite well, in terms of dealing with people in the outside world, in the developing countries. What is the stumbling block in this country? And in your country?

Sir John: I think that in the search for economic advance which is, God knows, unnecessary and the avoidance of economic decline, we have tended, I think, to put the emphasis on, I’m very worried, perhaps it must be the emphasis on production rather than on the non-delivery. And perhaps the two could go together more effectively. In your country, also, the extraordinary advance in every way, the exploding, the exploding science, the exploding communications, everything about it is fascinating and wonderful. And yet, are we…do we really have a caring society? And do we need a caring society? Would a caring society, in fact dull the edge of our advance? I don’t believe that it would. I think that we’ve got somehow or other to get together, to reconcile the two. And when you do, if we ever do develop a society which has care as well as competence, then perhaps for the second time in the history of the world, we’ll have discovered fire.

Heffner: Of course, at the very end of your Lasker speech, you say the modern equivalent of Renaissance man might be the computer-assisted scientific philosopher. And you put your emphasis upon that. But then you go on to make the point, at the very end of your speech. You quote Francis Bacon, you say, “Let us not so place our felicity in knowledge that we forget our morality”. And you say then, “Those of you who are working on AIDS are not likely to forget that”. Does that temper, somewhat your optimism?

Sir John: I think that, you know, some people say an optimist is simply somebody who doesn’t know the facts. Well, I tried to find the facts and I’ve travelled some fifty thousand miles a year. I worked in leper colonies and I worked in refugee camps and I worked amongst blindness. And I do believe that obviously there are these obstacles. AIDS is something which brings us up short. But don’t let’s go overboard about it. It is something we’re going to overcome, and it is something which…it could even stimulate the development of that delivery system without which no scientific invention is much good to anybody anyway. And I think that that is what I would like to say. I know it’s easy to be a windy optimist. I don’t believe that is what we want. What we want is a sort of reality. I mean we look at these problems with humility, but not, I think, with humiliation. And I don’t think we should either worry too much about the leadership we give in this. Wise men from the West also follow their star and when they do, they bring a formidable technology to bear on some of the world’s problems.

Heffner: Sir John, those are wonderful closing words. We have about a minute left. I want to ask you, it wouldn’t be lacking in graciousness for you to comment upon what you think we need to do in this country. You’re so familiar with our patterns of need. What would you suggest?

Sir John: Well, in terms of my own filed of disability, I very much hope that this American IMPACT Foundation, which has now got its headquarters in Washington, will really become a national institution, will really develop the sort of partnership which I think could have an enormous impact of the problem here in North America and the problems in the developed world generally. But it also, it could release some of the enthusiasm and skill and expertise of this country against what is, I believe, a fundamentally avoidable problem of human suffering across the world.

Heffner: Sir John, I’m so grateful to you for coming here today and discussing these problems with us. Please come back.

Sir John: Thank you.

Heffner: And thanks, too, to you in the audience. I hope you’ll join us again next time. And if you care to share your thoughts about today’s program, please write to THE OPEN MIND, P.O. Box 7977, FDR Station, New York, NY 10150. For transcripts send $2.00 in check or money order. Meanwhile, as an old friend used to say, “Good night and good luck”.

Continuing production of this series has generously been made possible by grants from: The Rosalind P. Walter Foundation; The M. Weiner Foundation of New Jersey; The Mediators and Richard and Gloria Manney; The Richard Lounsbery Foundation; Mr. Lawrence A. Wien; and The New York Times Company Foundation.